Thank you so much for visiting Grayton's Guardians of Raleigh Page! We are happy to walk in honor and support of Grayton and all his buddies who fight this difficult disease daily. I did not know much about CF until Grayton was diagnosed at 10 days old. We have come a long way and with your help will continue to pursue finding a cure. I have an incredible update from Grayton’s parents to share on his condition:
This past year Grayton turned 6 years old. While being 6 in general is AWESOME, it meant more in the CF world since the approval of TriKafta for 6-12 years of age that happened just last year. TriKafta is a revolutionary new drug therapy for certain CF patients and Grayton is one of them. He started taking TriKafta the day after his birthday this past September. In 6 months’ time we've seen dramatic changes in Grayton's test scores at the doctor's office. When Grayton was 2 weeks old, he was given a "sweat test" which measures the amount of chloride/salt in your sweat. CFers don't have the ability to absorb salt and pass it between cells, so a lot of that salt passes out of the body through sweat. They used to talk about CF babies and "salty kisses" otherwise known as the "kiss of death” back in the day. The lack of salt absorption inhibits the body's ability to absorb nutrients and stunts growth over time. Often CFers are smaller in size as a result, as well as high risk for malnutrition and things like COVID. The "sweat test" is considered the most reliable test for Cystic Fibrosis. A normal test result would be between 30-60 out of 100. When Grayton took the test at 2 weeks old, he scored a 95, guaranteeing to us that he has CF and blowing up our world in the process. Just this past month we asked his doctors if he could take another "sweat test". It's outside of normal protocol to have this measured after a positive result but they agreed to the test after we begged and pleaded. Grayton scored a 45 out of 100. 45!!!!! He still has CF genetically but his ability to absorb nutrients is closer to a normal child. It's not a cure, but this is HUGE NEWS for us as well as the entire CF community! His doctors are blown away and asking all their TriKafta patients to now get a sweat test going forward.
And we owe every bit of this to the donors of the CF Foundation. All research and development and financial assistance is funded entirely by the CF Foundation. This drug would cost us over $7,000 a month without that assistance. And it's a HUGE breakthrough for us as Grayton has such a rare version of CF, we weren't sure if there'd ever be a drug therapy for him. So, THANK YOU, THANK YOU, THANK YOU for continued support of the CF Foundation and changing our lives forever!
Nothing but love, Melissa, JB, Grayton & Ruby Pinkston
Making a difference feels so good. I know everyone has been so charitable as of late and I appreciate any small amount you can do for Grayton and finding a cure for this disease.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.